Should parents have the right to see a teen’s electronic health record? Will behavioral and mental health patients benefit from seeing notes from a therapist’s session? Should a college football player hoping for a professional career be dissuaded after a serious concussion?
Patient access to medical information was one of the key themes at “Florida Ethics: Debates, Decisions, Solutions,” a daylong conference hosted by the University of Miami and Florida Bioethics Network on April 12 at the Miami Marriott Biscayne Bay Hotel. More than 300 professionals and students from throughout Florida and beyond attended the 27th annual conference organized by the UM Miller School of Medicine’s Institute for Bioethics and Health Policy.
The meeting is the oldest and largest community ethics conference in the country.
“Our annual conference provides an ideal opportunity for professionals in health care organizations around the state to share their issues, ideas and solutions,” said Kenneth W. Goodman, Ph.D., director of the Miller School of Medicine Institute for Bioethics and Health Policy and the Florida Bioethics Network. “We try to address issues that are both timely and controversial, such as access to health information, end-of-life care and sports, in a way that leads to a practical, reasoned discussion.”
For instance, panelists from West Palm Beach and Weston hospitals discussed “End-of-Life Advocacy and Public Policy,” while Marin Gillis, Ph.D., professor and chief of the Division of Ethics, Humanities, and the Arts at Herbert Wertheim College of Medicine and Florida International University, moderated a discussion on “Educating the Modern Hospital Ethics Committee” with professionals from Miami, Fort Lauderdale and Jacksonville.
Expanding Access to Records
Dr. Goodman moderated a morning discussion on “Expanding Patient Access to Records,” noting that every institution in Florida is facing electronic health record (EHR) issues related to providers’ notes, patient data privacy, and institutional accountability and responsibility.
“Today, we live in a world where convenience comes first,” said panelist Jeffrey P. Brosco, M.D., Ph.D., professor of clinical pediatrics, associate director of the Mailman Center for Child Development, and director of Population Health Ethics, Institute for Bioethics and Health Policy. “However, confidentiality and privacy are embedded into the EHR, so providers are not allowed to text or email information to patients.”
While many ethical issues related to medical records date back to Hippocrates’ “sacred secrets,” others are impacted by the lack of connectivity of EHR platforms. For instance, mental and behavioral health notes are typically kept on different systems, making it difficult for pediatricians like Dr. Brosco to integrate those records.
“We also know that adolescents will be more open about sex, drugs and other behaviors if the provider doesn’t tell the parents,” Dr. Brosco added. “But until a child is 18, the parent or guardian, in most cases, needs to consent to the child’s treatment. So the questions arise: What information should parents be able to access from the EHR portal, and are our EHR platforms nimble enough to screen things out?”
Shifting gears, Stephen F. O’Neill, LICSW, behavioral health specialist at Beth Israel Deaconess Medical Center and Center for Bioethics, Harvard Medical School, outlined the growth of the national OpenNotes initiative, where physicians and therapists post their notes on secure patient portals. Patients have the option to look at their records, and providers have the option to delay or sequester some notes related to adolescent health or serious diagnoses like cancer or HIV infection.
“We have found that transparency builds patient trust and informed decisions,” said O’Neill. “It also engages clinicians and other professionals, drives us toward high-reliability care and has dropped our litigation risk considerably.”
Addressing football ethics
Stephen E. Olvey, M.D., associate professor of clinical neurology and neurosurgery, moderated a discussion on “Football Ethics” with Lee Kaplan, M.D, director of the University of Miami Sports Medicine Institute, the Petra and Stephen Levin Endowed Chair in Sports Medicine, and medical director and head team physician for the Miami Hurricanes and Miami Marlins, and William Thompson, M.D., orthopaedic surgeon for Florida State University Athletics.
“Football is the American sport,” said Dr. Olvey. “Everyone wants to have the best college or professional team, and that level of extreme competition combined with big money can lead to ethical dilemmas.”
On the collegiate level, Dr. Thompson said it’s very clear whose interests come first. “Every one of our athletes is a patient,” he said. “We are obligated to do what’s best for them, and sometimes that means protecting them from themselves.”
Dr. Kaplan said that fundamental commitment to patient health is essential after an athlete has suffered an injury such as a torn knee ligament, a broken bone or a concussion. “The players and their parents trust our judgment,” he added. “No one would overrule our medical decisions.” On the professional level, Dr. Kaplan said the National Football League’s rules changes and adoption of safer helmets led to a 30 percent drop in concussions in 2018.
Looking ahead, Dr. Thompson said, “Genetics plays a huge role in athletic performance. Studies indicate that certain brains can tolerate concussions better than others. Eventually, a genetic history will be part of a new standard of care.”